HPV related anal/rectal cancer

 Kateskins03  welcome to the group..

I was the same as you when I found out I had AC..the emotions ranged from shock..anger.devastation and shame due to the HPV element..but now it's acceptance I feel..

My oncologist has not said mine was hpv related I've just read up that 90% of AC is HPV caused..

Anyway.. I wish you all the vest thoughts and stay positive.. the treatment in the UK for me was 28 days of chemoradiation..

Day 1 was the chemo via a iv ..then radiotherapy directly afterwards.then for the remaining 27 radiotherapy .. chemo was tablet form.

The treatment does tire you out so rest as much as you can.. stay moisture down below.. around week 4 I started to feel my skin breaking up..so mostly I went commando from that point until about 3 weeks post treatment..

I'm 9 weeks post treatment now and almost back to normal..

Stay kind to yourself and reach out to this group if you have any concerns.. they really did help me through some dark times xx

Hi Kateskin, 

I remember that feeling, I was told in January I had SCC of the anal canal and it was a shock to say the least!  I am now just over three weeks post treatment so there is light at the end of the tunnel. 
I started showing side effects about 4 weeks in to treatment but your radiation team should provide you with all the creams and pain relief you need. Everyone is here to support you so do reach out, this forum is a godsend! 
Like Squeak said, rest as much as you can (I still am, I’m in bed most days but I know it will start to get better) and don’t be afraid to ask for help. 
I wish you the best of luck

Sarah xx

Hi Kateskins03,

Welcome to the forum, although I'm sorry to hear about your diagnosis. I too am in the States, and my treatment was 28 days of radiotherapy plus two rounds of chemo--the first round of chemo was delivered during the first week of radiation and the second round closer to the end of radiation therapy. Chemo involved two drugs that were delivered through a port--one of which I received via pump over four days. I'm not sure what exact chemo regimen you will receive as some people get some of the chemo orally instead of via infusion (particularly in the UK).

It's not an easy treatment, but it is effective, and you've come to the right place to get information and support. This forum has been a godsend for me. Like SarahLoo, I am about 3 weeks post-treatment and am still in the recovery stage.

Hang in there during the period before treatment. I remember having similar feelings to yours when I received the diagnosis and waited for treatment to begin. For many, the uncertainty changes once treatment begins. I'm not sure if it's because you're finally on the way to treating the cancer or if the regimen of daily trips to the treatment center gets your mind focussed on what's immediately before you. Whatever the case, for many of us, the emotional aspect of the diagnosis improves once treatment begins.

I'm sending you all my best wishes, and if you have any questions, please reach out. There is a lot of experience on this forum, and we are happy to help with shopping advice for treatment or any other questions. Xx

Hi Kateskins03 & another warm welcome from me to our little corner of the MacMillan Online Community although  I’m really sorry to hear of your recent diagnosis. 

It really is a rollercoaster of emotions isn’t it? Like you I thought my number was up when I first received my diagnosis, once I had my diagnostic scan results & had a chat with my colorectal surgeon I began to believe that I was going to have a life after this diagnosis. 

I joined this community & received incredible support from those that had gone before me, those that had recently been through treatment & some that were further down the line & back living their lives, which was so encouraging. I hope you find the same. 

A huge proportion of anal cancers are HPV related, I’m not aware if mine was or not, I asked the question & was told the hospital that I was treated at doesn’t test biopsies etc., for HPV as it doesn’t change the treatment or outcomes. I would have still liked to have known though. 

It’s a huge positive that your scans show no spread. 

Wishing you the very best of luck for your oncology appointment on the 1st of May, hopefully once you’ve a treatment plan in place you’ll begin to feel a little more in control as many of us have. 

If you’ve any questions at all please just ask, no question is too personal we’re pretty used to talking about our rear ends & toilet habits so nothing is taboo here. 

Nicola 

Hi Kateskin03,

Welcome to the forum although I’m sorry about your diagnosis. 
It’s a tough one to take in and understand totally about the feelings of your world falling apart on hearing the news. 
it’s particularly hard when you haven’t yet seen your oncologist and got your treatment plan.

I was diagnosed last August with SCC , HPV related and remember feeling devastated, terrified and ashamed. I had no idea what would happen next.

I had chemo radiotherapy which finished mid November and the 3 month scan showed no evidence of the tumour.

It’s great that you have found the forum as it’s an absolute mine of helpful information, support and practical advice so don’t hold back about absolutely anything you need to know. It’s also a safe space to bring any feelings as we all ‘get it’.

 I know treatment protocols are slightly different in the States but the pathway is similar.

Sending hugs x

You all are the best! Thank you for sharing your experiences with me!! I feel so ready to get this treatment started! I know it is going to be a very tough road for me, but I am mentally prepared for what I am about to endure. My husband asked me a question the other day.. He asked “what is your biggest fear with all of this” I felt very superficial in that moment because my immediate response wasn’t the pain, it wasn’t the possibility of losing my life.. my response was to lose my hair. Had I sat and pondered about it a little longer, my answer would have been “to leave my beautiful daughters behind” but I guess I wasn’t thinking the worst in that moment. So with that being said… Did any of you lose your hair during treatment? It wouldn’t be the end of the world, but I don’t know why I’m so nervous for that part. 

Ah bless u.. so many emotions.. once you start your treatment you will get into your little routine..sending big hugs 

My hair i think has gone a little thinner..but my hair dresser says it hasn't..

I made sure I didn't tie my hair up or use straightners on it for the full duration and a few weeks afterwards 

Well, that is reassuring! I’m glad you just had a little bit of thinning and not total hair loss. I can deal with that! I appreciate your quick response and I will definitely take on these tips as far as heat on my hair and tying it up. 

Dear Kateskins03- I am a 69-year-old woman who completed treatment for squamous cell, HPV positive anal cancer, stage T2 (localized no node involvement) on Christmas eve 2024. I had 6 weeks of radiation and daily oral chemo plus two short duration infusions of a drug called mitomycin. Like you I was terrified of going through the treatment and I too was most fearful about the possibility of losing my hair and it wasn't just a vanity thing (although of course that played a role) but I also I didn't want to "look" sick; especially around my daughters and grandchild. They would have understood of course, but it was something that was important to me. I had read in this forum that most people did not lose the hair on their head, but some did have thinning. I decided to do "cold capping" during my two infusions as I had read that Mitomycin - a more powerful chemo drug then the daily capecitabine I was taking, could cause hair loss. In my case I never did lose my hair, nor did I even have thinning (other than the thinning all women of a certain age tend to get). I did lose my pubic hair permanently as others warned me I might, but that was small potatoes. I wanted to share this news to encourage you and to let you know that you are not alone in your concerns. It goes without saying that no two people respond to chemo the exact same way, but I haven't read a single entry on this forum as pertains to the treatment of anal cancer, that suggested someone had lost all of their hair.

Best of luck to you...and know that there is daylight at the end of the tunnel. I feel like my old self again and am back to walking 3 miles a day. Before you know it, this will all be in the rear-view mirror. I live in the US but I have found this forum to be the most supportive and informative of all of them!

Hi Kateskins03,

I think I am an outlier on this one, but I did lose a lot of hair during treatment (in fact, three weeks post-treatment my hair is still falling out--ugh). BUT I have not lost all my hair--just about half of it, I would say. The end result is that my hair is definitely thinner but I don't have bald spots or anything like that. 

Things I did to try to mitigate the loss were shampooing using baby shampoo only three times per week, avoiding heat or styling of any kind, and gentle brushing.

My oncologist told me my hair would start to grow back about two months after completing therapy, so I am looking forward to that! And I totally understand how losing your hair would be a fear--I read on a cancer website that hair loss is an emotional topic for nearly all cancer patients--but you're unlikely to lose all your hair during treatment, and if you're like most AC patients, what you do lose won't even be noticeable to others. Xx